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Sun Oct 27, 2013 at 10:30 AM PDT

Once upon a time

by MsGrin

......there was a little girl who got left behind by the person who was most important in her life.

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CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).

Tonight's diary by: MsGrin

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...if you DO have Lyme disease, do not imbide any liquids as you read this because of danger of choking.  And set down any implement of any kind which could harm the furniture or critters which maybe nearby just in case you drop things in the fit of hilarity which may ensue.

SERIOUSLY - PROTECT YOURSELF BEFORE YOU READ THIS.  
YOU MAY ACHE WITH LAUGHTER.
YOU HAVE BEEN WARNED!

WARNING TO NON-LYME AMERICANS (or those of other nationalities):

This diary, while factual, has a tone of black humor snarkiness which will likely be understood by anyone who has been sick with Lyme for a long time and told repeatedly that they couldn't possibly have it.  

If you do not have Lyme disease, the humor may not be self-evident. See title, tip jar, and tags for amplification.

So, did you hear the one about how Senator Joe 'You Lie' Wilson was hospitalized  this week due to a fever believed to be attributable to Lyme disease?

You're likely thinking what I was - that the psychiatric issues with Lyme brain can have a seriously negative impact on things like impulse control and anger, but he was suspecting he was infected this summer, so his outburst likely would not be attributable to the neuropsychiatric effects of Lyme.

Today's news report after the squiggle...

Poll

So, do you think Joe 'You Lie' Wilson was infected with Lyme?

27%14 votes
17%9 votes
13%7 votes
33%17 votes
7%4 votes

| 51 votes | Vote | Results

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Arguably, the American Dream has morphed from 2.7 kids and a house with a white picket fence, to get rich quick without doing any work.  

This diary is begins about a recently uncovered and addresssed scheme to get paid for no work which hopefully has been sufficiently corrected by actions taken by Medicare's Office of Inspector General (OIG).

* * *

The concept of hospice is a relatively recent idea, having been established in England by Dame Cecily Saunders:

Dame Cicely founded St Christopher's Hospice in 1967 as the first hospice linking expert pain and symptom control, compassionate care, teaching and clinical research.  St Christopher's has been a pioneer in the field of palliative medicine, which is now established worldwide.

Through her single-minded vision, and the clinical practice and dissemination of her work through St Christopher's teaching and outreach, Dame Cicely revolutionised the way in which society cares for the ill, the dying and the bereaved.

The current overview of St. Christopher's Hospice begins thusly:

Our vision is of a world in which all dying people and those close to them have access to appropriate care and support, when they need it, wherever they need it and whoever they are.

Sounds kinda like Shangri-La, no?  If you're coming to the close of your life (or supporting someone who is), g'head and focus on that, 'cause, it's like, kinda big.  (Edit:  The original diary draft had a lot more about my several near-death experiences and struggling back from them, so 'Shangri-La' might have made more sense in that context - the 'end of life' part of hospice is not lost on me.)

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CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
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Miracles are spontaneous, they cannot be summoned, but come of themselves.                                              
                                                                        ~Katherine Anne Porter

Update:  Thank you contributors and commentors for your delicious generosity!  Sufficient funds have been received.  I knew it wasn't possible for Heather to be anywhere but Minneapolis June 16-19!

Well, this IS actually a summons.  My friend, Heather (known here as Chacounne), has been planning on attending NN11 in Minneapolis this week, and it was already something of a miracle that she had been able to pull it together to be there.  

Many of you know her for contributions to Daily Kos on the torture issue, and you may also know that she has been deeply inolved with torture coverage at DK in general and specifically the anti-torture activist/roundtable discussion at Netroots Nation.

If you've read any of Heather's diaries and comments, you are aware that she does this work as a memory tribute for her beloved husband, Dan.  She tells me that this week is actually the sixth anniversary of his heart attack:

My husband, Dan, was a Vietnam vet who survived torture. Six years ago, Dan had a fatal heart attack & left me a mission, to stop torture as the law, policy & practice of the US, & to fight for accountability, For Dan.

If you read Chronic Tonic, you're also aware that she has physical challenges and that she has pain and accessibility issues as well as the predictable obstacles which come from living on a fixed income.

A few months ago, Heather moved into a space which was comfortable and accommodated her needs.  Unfortunately for all concerned, that ended abruptly when one of her room mates died unexpectedly.  In addition to the shock of the loss of her friend, this required that Heather's funds be directed toward finding new accommodations and moving.  This is the THIRD move she's made in the past year.

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This is not a diary, it's email - I just can't send it to multiple recipients through the email system...

Last year, we did a collaborative piece on our stories of Lyme diagnosis - http://www.dailykos.com/...

This year, I want to use the same format to do a piece on how we all were after 30 days of antibiotics.  

If you have been prescribed antibiotics for a tickborne disease, whatever your experiece, I'd love a paragraph or so about what happened for you in that time period.  I imagine we'll have a variety of stories from such an effort.

Thank you,

MsGrin

Discuss

Fri May 13, 2011 at 10:07 AM PDT

My La-la-la-Lyme Friday Morning

by MsGrin

I find myself in a waking dream state this Friday morning - it doesn't seem that terribly strange, because when this feeling hits, I'm walking down a dirt road, the kind which might of its own induce a person to feel rather dreamy.  It's relatively early on a spring morning, the earth and grasses and birds happy from the much-needed rain which finally came yesterday.  There's a gentle breeze, life feels fine.  The sun is not hot yet, and may not be overpowering today.  Birds are singing, it's a beautiful day.

It's all quite familiar... But if you asked me who or where I am in place and time, it would have taken me several moments to put that information together.

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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
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Thu Jan 13, 2011 at 04:40 PM PST

Petition to EPA to Help Save Bees

by MsGrin

Avaag.org is collecting signatures to be sent to EPA Administrator Lisa Jackson:

We call on you to immediately ban the use of neonicotinoid pesticides until and unless new independent scientific studies prove they are safe. The catastrophic demise of bee colonies could put our whole food chain in danger. If you act urgently with precaution now, we could save bees from extinction.

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http://www.whitehouse.gov/...

From White House Blogs

For months now, a team at an Indiana plant has been hard at work preparing to manufacture electric delivery trucks that are entirely powered by plug-in power.  They’ve been installing equipment, retrofitting an old manufacturing facility, assembling parts, testing the new technology – and today they became the very first Recovery Act recipient to deliver an electric vehicle with the advanced battery and electric drive grants the President announced last year as they unveiled their new truck today and handed the keys off to the customer.

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Happy Easter to those who celebrate, Happy Spring to Everyone!

Sunrise on the farm

On The Farm 392

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Because our lawsuit challenges the whole notion of gene patenting, this decision could have far-reaching effects beyond the BRCA genes. Approximately 20 percent of all human genes have been patented, including genes associated with Alzheimer's disease, muscular dystrophy, colon cancer, asthma, and many other illnesses. ~ACLU

Please watch - In the vid below, science writer, Kris Newby, and Merrill Goozner, former Director, Center for Science in the Public Interest illustrate why patenting the Borellia bergdorferi organism has led to patients infected with Lyme disease not getting diagnosis and treatment for their disease:

Poll

Could the politics of financial interest impact whether you and your loved ones access medical diagnosis & treatment?

87%62 votes
12%9 votes

| 71 votes | Vote | Results

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